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My personal journey and issues with prescription medication
The medication side effects listed below are only relevant to my own unique experience and circumstances.
The effectiveness of any given medication is a matter for you to discuss with your prescribing practitioner.
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This timeline encapsulates 50 years, of chronicling my journey with chronic health conditions. Over this period, I have encountered various medical procedures aimed at managing these conditions. These procedures were likely necessary interventions to address specific health issues that arose, reflecting the complexities of managing chronic illnesses. Unfortunately, despite medical interventions, I also experienced permanent damage as a result of these conditions or their prescribed treatments. This permanent damage underscores the challenges and long-term impact that chronic health conditions can have on an individual's life. The timeline serves as a visual representation of the significant medical interventions I've undergone and the enduring effects they've had on my health and well-being. It highlights the resilience and perseverance required in navigating a lifelong journey with chronic illness, while also emphasizing the importance of ongoing medical care and support.
In all of the examples below the medical professionals believed they were doing the best care plan possible. Unfortunatily either through a lack of awareness or training, I experienced real physical long-term damage that drug interactions caused.
I hold no animosity to those individuals as they all tried their best to help me resolve my conditions.
I take some personal blame for the same issue happening on more than one occasion, hence the name "fool me once" which reflects that I should have learned to advocate for myself better than I have done.
"Fool me once shame on you, fool me twice shame on me"
To set the scene, with some background facts.
Male
Born in the early 1960's in Scotland - 1 of 6 children
Moved to Australia in the early 2000s
Age 7 years - Diagnosed with Psoriasis
At a young age, I was diagnosed with Psoriasis.
In the 1960's the only treatment was topical and moisturising the skin as often as possible. This condition is still with me some 50 years later. This condition would be the cause of later issues regarding drug interactions.
Age 19 years - Appendicitis surgery
Vomiting and side pain resulted in surgery for appendicitis surgery.
Age 20 years - Diagnosed with High Blood Pressure
After entering the workplace I started to have problems with my blood pressure. I was prescribed "Beta Blockers" which controlled my BP but later would be a source of issues with my Psoriasis, making the condition worse. It was at this time I was prescribed "Dovonex" to help with my condition. This would be in my opinion the first major drug interaction I had as the following illustrates.
Age 33 Years - Recurring Kidney Stones (left Kidney) DANGEROUS SIDE EFFECT-OVER DOSAGE
By this stage, I was starting to get recurring kidney stones. There was no obvious cause. In total, I was hospitalised on at least 3 occasions. On one particular admission, I was there for 4 weeks as it was proving impossible to get the large stone out. It wasn't until my 3 or 4th admission that a surgeon began to ask why these stones were so hard and difficult to remove. A medication review happened and it was discovered that my GP had been overdosing me on Dovonex (Psoriasis Meds) by a factor of 10 over 2 years. Dovonex is essentially calcium, and it had been collecting in my kidneys (left one in particular) and causing stones. This would later give me issues with my kidneys as some trauma had been indicated in my left kidney.
Age 33 Years - IgA Nephropathy - Kidney Condition
Following a routine medical for work it was discovered that I had excess protein in my urine. This led to a further hospital admission and a biopsy of my left kidney. The biopsy confirmed I had IgA nephropathy. This condition means that I am losing kidney function over time and could result at some later stage either dialysis or a kidney transplant. The biopsy was on my left kidney and may have added to the existing trauma mentioned above during the kidney stone events. This could have also affected a later diagnosis of kidney cancer (see below) this condition is for life and is controlled with BP meds which have proven effective to date.
Age 40 Years - Muscle weakness in both legs and cognition problems. DANGEROUS SIDE EFFECT
Not long after arriving in Australia my GP suggested I take a "Statin" to help my marginally high cholesterol. I agreed but within a couple of months was having difficulty walking and friends and family were commenting on my memory loss. A couple of visits to A&E concluded that I could not tolerate Statins. The drug was removed and the issues cleared up [This issue would surface again]
Age 45 years - Recurring Pancreatitis - DANGEROUS SIDE EFFECT
A visit to my GP for a driver's medical was with a locum GP as mine was on holiday. During this consult my marginally high cholesterol was brought up again. The GP suggested going back on the Statin despite my previous issues. He assured me that they had improved over time and that the previous issues would in his opinion not be an issue. I agreed to take the drug. (THIS WAS A HUGE MISTAKE)
One month after commencing the drug I was taken to hospital for a suspected heart attack, but it was later diagnosed as pancreatitis.
What followed was a 12-week hospital admission as I had further attacks whilst in hospital. Each day I would ask if the new drug could be the issue, only to be told no. After 12 weeks a pharmacist was in the room and he informed the Doctors that Statins can cause pancreatitis. The drug was stopped and I had no further attacks. However, by then my pancreas was damaged beyond repair and I now had pancreatic insufficiency.
As a precaution during my many attacks, they removed my gallbladder which would cause issues with cholesterol later on. (see below)
Age 46years - Type 2 Renel Cell Carcinoma
Whilst in hospital with pancreatitis an incidental find was found on my left kidney. It was discovered that I had a tumor on the bottom pole of my left kidney. (Could this be related to over 4 procedures carried out on this kidney - see above) Originally the hospital wanted to remove my whole kidney, however, it was decided that given my IgA nephropathy, the best solution would be a partial nephrectomy to leave as much functioning kidney as possible.
Age 47 Years - Diagnosed with depression
Given all of the above, it is no surprise that by now medical trauma was taking its toll. However, I managed to avoid any permanent medication. This too required a short spell in hospital. This is ongoing as long as I am interacting with the medical profession.
Age 50 Years - Diagnosed as Type 2 Diabetic
Given my pancreatic insufficiency, it was only a matter of time before this diagnosis appeared. In the beginning, I was on oral medication, but would eventually be required to go on insulin. The medications I have been on for some years now has only helped me with this condition.
Age 51 Years - 2 separate heart attacks in 18 months & Ross River Virus
Once again my cardiovascular health was impacted by the domino effect from previous issues. On each occasion, a coronary stent was inserted to help my heart. Contracted Ross River Virus after a camping trip, RRV lasted 18 months
Age 57 Years - A Thelamic Stroke Left Side.
Feeling not too good I went to my GP after feeling unwell for 2 days. He suspected I had had a stroke which was later confirmed by MRI. Cognitive and physical disability treatment was commenced and a new drug "Repatha" was introduced by the hospital to control my cholesterol, this drug would over time cause me some more issues. (See Below) It was discovered that I have had 2 other smaller strokes during the hospital visit. Also a benign brain tumor. MVNT
Age 58 Years- Neuropathic Pain - Following Stroke
After my stroke, I developed neuropathic pain on the right side. It was more like my right arm was frozen and cold. After trying many types of pain relief including Pregabalin and Tramadol (Not recommended long term) we settled on a medicinal cannabis oil called Spectrum Blue. To date, this has worked well.
Age 59 Years - Partial Thyroidectomy
Whilst having an MRI it was discovered I had a growth on my Thyroid. A partial thyroidectomy was performed and the results came back benign.
Age 59 Years - Ongoing Mental Health Support
Given the myriad of medical issues I have I am lucky to work with an outstanding Clinical Psychologist to help me through the many issues I have to deal with.
Age 60 Years - Cognitive Impairment and Muscle Weakness - DANGEROUS SIDE EFFECTS
For almost 2 years since my stroke, I have gradually found it harder and harder to walk. On top of this, I have seen a decline in my cognition. This has resulted in almost 3 admissions to the hospital with the muscle weakness being so bad at times I need a wheelchair. As part of a full review, my GP suspected some of my issues were related to an antidepressant called Venlafaxine. This was removed over time and some of my most concerning issues cleared up. Venlafaxine caused me to have spasms and electric shock feelings in my body. A blood test confirmed it was poisoning me. ( I have also removed the Repatha and my cognition has improved but not my imobility, it appears I can't tolarate this drug also)
Ongoing Inability to walk
My inability to walk has deterioated. I can only walk short distances of approx 100m. Outside of this distance I have to use a wheelchair. Doctors are explored the use of the drug Repatha (PCSK9 Inhibitor) and wether it at the root of the problem, this seems to be ruled out now. The condition it appears to cause is CIDP (Chronic Inflammatory Demyelinating Polyneuropathy. FND has also been discussed. Functional Neurological Disorder appears to be the most likely cause.
Here is a link to a patient on this Repatha experiencing the same symtoms as myself.
Also Experts Issue Caution for Evolocumab(Repatha) Following New Review of FOURIER Data; Amgen the maker disputes the claims
Information correct as of December 2024 - Approx Time In Hospital = 38 weeks
A Word Of Thanks.
I am extremely fortunate that at a crucial time, I was introduced to a specialist Doctor to review me after my heart attacks, who in my opinion is superb at his job. (General Medicine Specialist)
He took on the role himself of coordinating with my other consultants and GP to ensure continuity of care. If it was not for him and my GP I'm sure that my experience would be a lot more traumatic and open to further errors.
With their care and understanding, they take all of the above into consideration before introducing any new meds or introducing a new specialist. I owe them a huge thanks.
Thank You.
